ALS: Facing the Journey with Support, Resources and Courage.

What would you do if your mind remained sharp, but your body slowly ceased to respond? Join me as I explore the harrowing reality of ALS, a neurodegenerative disease that traps individuals in their own bodies while leaving their cognitive functions intact. With no cure in sight and a life expectancy of just a few years post-diagnosis, we unravel the unpredictable progression of this disease through real-life stories that highlight the stark disconnect between an active mind and an unresponsive body. 

In my conversation with Nancy Wakefield, Managing Director of Care Services with the ALS Association, and Ann Graef, who shares her personal journey as a caregiver and board member, we dive into the emotional landscape faced by those affected by ALS. Nancy and Ann reveal the crucial role of early support from organizations like the ALS Association, underscoring the relief that comes from connecting with a community ready to help. From research initiatives to advocacy and comprehensive care models, we paint a picture of the extensive support network available and its impact across Northern California.

We also shine a light on the vital role of community involvement and funding in sustaining ALS services. Through events like the Walk to Defeat ALS, we witness the resilience and camaraderie among participants that fuel both awareness and financial support. Our discussions further touch on the pressing need for enhanced support for caregivers, whose dedication often goes unseen, and the importance of clinical trials in the quest for treatments. The narrative woven through this episode is one of unwavering hope and the relentless pursuit of a better future for those touched by ALS.

To learn more about ALS Association or the disease in general, visit their website HERE

CHAPTER SUMMARIES:

(00:00) Understanding ALS
ALS is a fatal neurodegenerative disease that disrupts communication between the brain and muscles, leading to loss of movement, speech, and eventually the ability to eat and breathe.

(11:17) ALS Association Services and Support
ALS Association provides support, research, and multidisciplinary care for those affected by ALS in Northern California and neighboring regions.

(26:00) Funding and Support for ALS Services
ALS organizations receive funding from local tribes and foundations, and events like the Walk to Defeat ALS foster community and showcase resilience.

(30:43) Supporting Caregivers and Clinical Trials
Caregivers of ALS patients face challenges due to lack of support and financial assistance, hindering participation in clinical trials.

(36:12) Navigating Caregiving in ALS Support
Volunteers play a significant role in caregiving for individuals with ALS, providing support and facilitating tasks, while maintaining emotional well-being.

(45:06) ALS Support and Resources in Sacramento
Support and resources for ALS patients and families, emphasizing community and organizational aid and gratitude for dedicated efforts.

Thank you so much for listening! We appreciate you. Please visit the website to sign up for our email updates and newsletter. https://www.nonprofpod.com/ And if you like, leave me a voicemail to comment on the program, leave a question for us to ask in the future or a message for me, Jeff Holden. I may even use your voice mail message in a future episode. https://www.nonprofpod.com/voicemail. Thanks again for your support in listening, commenting and sharing the great work our local nonprofits are accomplishing.

Transcript

Nancy Wakefield: [00:00:00] I've many times had the experience of having somebody call me right after they get the diagnosis and don't know what to do next, and then we're able to spend time on the phone with them. This is how we can support you. These are the programs and services that are available to you free of cost. Just that knowledge that they are not alone, that there's somebody there who is gonna help them through this disease, can make a world of difference.

Jeff Holden: Hi. I'm Jeff Holden. Welcome to the Nonprofit Podcast Network. Our purpose and passion is to highlight a nonprofit organization in each weekly episode, giving that organization an opportunity to tell their story in their words, to better inform and [00:01:00] educate the respective communities they serve, as well as provide one more tool for them to share their message to constituents and donors.

Our goal is to help build stronger communities through shared voices, and to both encourage and support the growth of local nonprofit organizations through podcasting. Thanks to our partners for their support in getting these stories Told smud, Sacramento Metropolitan Utility Districts Shine awards program benefiting nonprofits for energy efficiency.

CAPTRUST fiduciary advice for endowments and foundations and Western Health Advantage, a full service healthcare plan for individuals, employer groups, and families. Amyotrophic lateral sclerosis. Those three words may not mean much to you until I abbreviate or align them differently. How about a LS or Lou Gehrig's Disease?

Now? It likely sends a chill down your spine as it's a well-known disease. With no cure. [00:02:00] In this episode, we'll embark on a journey into the world of A LSA formidable neurodegenerative disease that affects thousands of lives across the globe. We'll grow our understanding of this complex condition from its initial diagnosis to its unpredictable progression.

A LS challenges individuals with a sharp mind and an unresponsive body. True, powerful personal stories will illuminate the emotional and physical hurdles faced by patients and their families revealing the profound impact this disease has on daily life. I'm joined by two remarkable women, Nancy Wakefield, managing director of care services with the A LS Association, and Anne Grave, a board member and caregiver who courageously shares her personal story through her late husband's battle with a LS.

Together they'll highlight the indispensable role of community support and the importance of early engagement with organizations that provide vital resources [00:03:00] and care. We'll learn how a LS is the resource for information and research into this disease and the support the organization provides to those families.

Experiencing the challenges a LS creates. Nancy Wakefield, Ann Grave, welcome to the Nonprofit Podcast Network. 

Nancy Wakefield: Thank you. We're happy to be here. 

Jeff Holden: Excited to have you here because it's a topic and a conversation that isn't had as often as I think it needs to be had. And what we're gonna be talking about is, is A LSI will not try to pronounce it.

I'll let one of you two do that. And if you could address for us, first of all, what that name is, and then it'll be very clear why we always call it a LS. Mm-hmm. And just give us a high level view of what this disease is. 

Nancy Wakefield: So it's amyotrophic lateral sclerosis, and so yeah, that's why we call it a LS.

Mm-hmm. If you can [00:04:00] believe, people still will recognize it as Lou Gehrig's disease. Even though I think a lot of people don't know who Lou Gehrig is any longer. If you say Lou Gehrig's disease, usually people will know what you're talking about. It is a neurodegenerative disease that basically. Affects the brain's ability to communicate with the muscles.

So slowly a person will lose the ability to move their muscles, their limbs, the ability to talk, and then eat. And then breathe. 

Jeff Holden: Mm-hmm. So it is an incurable situation at this point in time and a diagnosis, unfortunately. Does not have a resolve. There's no resolution, 

Nancy Wakefield: there isn't. It is always fatal at this point.

Jeff Holden: Mm-hmm. 

Nancy Wakefield: Usually people are given two to five years, [00:05:00] 

Jeff Holden: and if I read correctly on some of the information I was trying to absorb, it doesn't impact the census because they're not muscle driven. So you can still smell and touch and feel and see. Which is amazing to think that that piece continues where it's, anything that muscle related is the degenerative or deteriorating part of the disease.

Nancy Wakefield: Yeah, you're correct. It doesn't, and, and not only that, it also in most cases does not affect the brain. So the person is the same person aware of everything that's happening to them. There is a small percentage, less than 10% that may also show signs of FTD frontal temporal dementia. 

Jeff Holden: Okay. I was going to ask if there are any correlations or if they've seen anything in research to date [00:06:00] that looks like either Alzheimer's or dementia or some sort of coding of the, you know, neuroplasticity elements of the brain.

I, I don't know. 

Nancy Wakefield: Yeah, I mean, I think, you know, what we can see is that there are a lot of illnesses and a lot of diagnosis that fall under kind of that same neuromuscular neurodegenerative. You know, heading and can look a lot very similar to one another, so, which makes it very difficult to get a diagnosis.

Jeff Holden: I was just gonna ask about that. 

Nancy Wakefield: Yeah. It can take quite a while. We're getting better and better at it, but because there are no tests that tell you you can't take a blood test and it'll tell you, oh yeah, you have a LS that doesn't exist at this point because of that. It can take quite a while, and it's a matter of kind of eliminating everything else until you come down to, okay, it's nothing else.

It's a LS. Now [00:07:00] watching the progression of the disease will then definitively tell a doctor yes. Mm-hmm. That is the correct diagnosis, but there isn't a test at this time 

Ann Graef: to make it real to people. What I, what I say is, so imagine you're sitting there. You have an itch on your face, but you can't move your arm to itch that, you know?

How does that, how does that feel? And as the disease progresses, let's say you're sitting with your, with your arms and one of them falls off the armchair, well, you can't pick it up and, and put it back on all these little things that you take for granted, things you do with your, your hand, that that doesn't happen.

Imagine looking at your hand. And you're telling it to pick something up and nothing is happening that makes it real. 

Jeff Holden: And, and the brain is still functioning saying That's correct. It should. Yeah. But it doesn't. That's 

Ann Graef: correct. And you're 

Jeff Holden: perfectly aware of the fact that you can't do this. 

Ann Graef: Right. Actually, you allow, you can see the, the muscles twitching down, down the [00:08:00] arm.

They call 'em vacillations. Yeah. Sometimes it's visible. Yes. Yeah. Yes. Yeah. 

Jeff Holden: Meaning the brain's trying to tell it to do something it 

Nancy Wakefield: can't get 

Jeff Holden: through. Mm-hmm. It can't get through. 

Nancy Wakefield: People often will ask me like, well, what are the signs that, you know, everybody wants to know, right? Because, you know, do I have, I've had some issues.

You know, people will think that way. And usually, you know, as, as I said it, it's a progressive disease, so it'll start with something small. So if it's gonna start, let's say in your hand, you may suddenly realize that you're dropping things. You are not able to hold your, your pencil like you were before.

If it starts in your foot, maybe you're finding that you're tripping a lot. We find that a lot of people have very active lives, so I hear often like, you know, I'm a runner and I just kept tripping. Or you know, I'm a tennis player and I just wasn't [00:09:00] having the strength. And then. Sometimes it starts with the voice.

And so what you'll see with that is that somebody's speech will start to sound different usually it sounds like they've had a few too many cocktails. Mm-hmm. And, and they're slurring. And people, you know, if, if people hear them, they may not say anything for a while because they're thinking Oh, wow. 

Jeff Holden: As a problem.

Right? Yeah. 

Ann Graef: Yeah. And you'll, you'll notice when Nancy's talking, she says, for some people it starts here and for some other people it starts there. It makes, it does make it difficult to diagnose. Mm-hmm. Because there isn't one clear path mm-hmm. From beginning to end. It's different. Um, exactly. I mean, some people will re retain a portion all the way up until the end.

It it, they just don't ever lose that one particular Yeah. Particular piece, depending on how long they live. 

Jeff Holden: And by piece you mean that that element of movement or whatever it may be? Yes. 

Nancy Wakefield: Yes. Okay. So you may have someone who completely [00:10:00] loses the ability to talk, but remains mobile or vice versa. Right.

They may lose all ability to move, but can still talk throughout. The disease or maybe they just, you know, lose the ability to use their legs, but continue to be able to use their arms. It just can look different for everybody. That 

Ann Graef: unpredictability is, is very difficult 

Jeff Holden: and it certainly makes it much more difficult to diagnose then too, because yes, other diseases look similar.

You may see that voice vocal situation with Parkinson's, as you know, we all know people with that disease. Exactly. Mm-hmm. The same with some motor skills, you're dropping things, et cetera, et cetera. So it, it's certainly gotta be frustrating in the diagnostic process because you don't know exactly and there's not a test, a blood test or something simple to say, it's this.

Mm-hmm. Mm-hmm. And did I see that there seems to be a higher propensity in military, [00:11:00] 

Nancy Wakefield: so veterans are twice as likely. To get a LS, we don't know why yet. Mm-hmm. This is part of why, you know, clinical trials are, are so important. Why funding research is so important. The a LS association is the largest funder worldwide of a LS research, and that's the only way we're gonna be able to.

Figure out why do people get a LS. 

Jeff Holden: Mm-hmm. You 

Nancy Wakefield: know, why is it that veterans we're seeing many more veterans than, you know, the, the normal population getting a LS 

Jeff Holden: Let's move on. Because I think we've done a good job of framing the disease. Mm-hmm. At least for the naive observer, the casual observer who just is, uh, what about this?

Yeah. Because this is where the positive side of it starts, and there is an organization like a LS, and you started down the path of, it's the research resource. Mm-hmm. Trying to [00:12:00] find some solution, some mechanism that allows either a better diagnostic process and or possibly some sort of relief for the disease.

Either e extension of life with the disease. Hopefully at some point in time benefit of a cure for elements of it or whatever we know once we learn what we learn. Tell us a little bit about what that looks like with the organization. 

Nancy Wakefield: Yeah, I mean, you're right when you say it's a bit of a relief, you know, I've many times had the experience of having somebody call me right after they get the diagnosis.

Like literally walking out of the doctor's office. They get in their car and they're, you know, trying to figure out what is this? Or people who have been sitting with the diagnosis for a while and, and don't know what to do next, and they get ahold of us and then we're able to spend time on, on the phone with them and, and can, you know, speak to [00:13:00] this.

But we're able to spend time with them and let them know, you know. This is what's available. This is how we can support you. These are the programs and services that you know are available to you free of cost and help guide them for, you know, next steps. 

Jeff Holden: Mm-hmm. 

Nancy Wakefield: Just that knowledge that they are not alone, that there's somebody there who is gonna help them through this, you know, through this disease, can make a world of difference.

I mean, I, I, you know, I, I wish I could explain better what that's like to first get that phone call and at the end of the phone call to hear the relief of somebody who knows now I'm not alone. And then, you know. Moving further on. If they attend a support group, then realizing there's a whole community out there because it can feel very lonely.

It can feel like I'm the only one going through this and nobody understands. That's [00:14:00] where support groups can be, you know, so important. 

Jeff Holden: Mm-hmm. And, and, and to your point that is so significant, Nancy, you've been with the organization how long now? 

Nancy Wakefield: 15 years. 

Jeff Holden: Okay. So you've seen a lot of these calls. You've had a lot of people come through.

And Anne. Your husband passed how long ago? 

Ann Graef: Uh, 14 years ago. 

Jeff Holden: Okay. So you've been involved for at least 15, 16 years? 

Ann Graef: Yes, 16 years. And I, and I was gonna say that the neurologists are the ones who are, are telling their patients, you know, you need to get in contact with the a LS Association. That was two things they said to my husband and myself when we were, you know, at the end of our, at the end of our visit, they said, number one, they looked at him and said, you need to retire.

And they said, and number, number two, they said, and there's a reason for that. And number two, they said, you need to get in touch with the a LS association, which we did because not only do you feel lonely, you're scared. Sure. You're, you're, you're scared. You, you, you contact them, you get the initial information.

You, you're online, you're [00:15:00] looking it up. And it's just, it's just, it's frightening to see pictures of, I remember my husband saying, that's going to be me. And I'm thinking next to him, and how do I take care of this, this individual while they're, they're sick. How am I gonna do this? And what's it gonna do to the two of us?

What is our future gonna look like? It it is, it's scary, it's lonely. And to know that when you call them, there's someone to say, okay, why don't you come in or I'll meet you somewhere and we can start talking about how we can help you and what services we have. 

Jeff Holden: Yeah. And nothing is worse than the uncertainty of it all.

Nothing. Yeah. 

Ann Graef: That hasn't left me even in 16 years. I remember that, that two week period where you just wanted to, you wanted to hide, you wanted to, I mean, it was over Christmas too, and you know you have to deal with it. Right. You know, you and you, you learn really quickly. You can't wait. Right. But there is someone there who's gonna be holding your hand, and so there's a Nancy there that's holding your hand, taking you through who I know that I can call.

I mean, they respond to calls, you know, just [00:16:00] like that. 

Jeff Holden: Which is amazing because that is what you need. Mm-hmm. You need that embrace from somebody to just say, okay, we got you. We understand it. We can walk you through it. We'll at least help clarify the lack of knowledge that you have on it. Understandable.

So, and we'll introduce you to the steps in the process. Let's get into that a little bit. Now, your territory is huge, if I'm not mistaken. 

Nancy Wakefield: So Well, it's a national organization. Yes. This particular Sacramento office covers 24 counties. Okay. In Northern California. So 

Jeff Holden: northern most to Eastern. Give us our, our scope.

Yeah. It 

Nancy Wakefield: goes all the way up to the Oregon border. And then as. Far south as Stockton area. 

Jeff Holden: Okay. 

Nancy Wakefield: And then out to, we border like Sonoma County. Yeah. So it's, wow. It's, it's a large area. But I, I should also mention that we also serve people in the surrounding areas. [00:17:00] So if somebody calls us from Reno 

Jeff Holden: mm-hmm.

Nancy Wakefield: And we will work, you know, with, with them as well. Usually people from that area come to a clinic here in Sacramento and we can talk about the clinics. Yeah. Yeah. We're gonna get 

Jeff Holden: there in just a second. Yeah. 

Ann Graef: It just helps with the logistics for, for someone who, I mean, even though you live maybe in Vallejo.

For you to go into San Francisco to a clinic that has it, it just, it takes, it's faster for them actually to drive up here mm-hmm. Than it is for them to go to down to another city in order to do that. Yeah. So, you know, or you live on the border of Oregon, you know, it's may might be easier for you to get to Sacramento than it's to get somewhere in, in, in your state.

Jeff Holden: Let's talk about what that is. What are the services that a LS Association provides? Mm-hmm. Because they're quite. Fraud in scope? 

Nancy Wakefield: Yeah. Well, we have three pillars. So we, we [00:18:00] touched upon research. 

Jeff Holden: Mm-hmm. 

Nancy Wakefield: So we are funding research globally. We also do advocacy, so we're talking about federal advocacy as well as local California legislature supporting, you know, all of those efforts.

With legislature that may affect people living with a LS. Mm-hmm. And then the final thing is the care services, which is where I've been working for the 15 years that I've been here. And, and care services are really wraparound services, meaning we're there for whatever the needs may be. So obviously a lot of it is that support aspect, which is gonna include giving information, helping educate people.

But on top of that, we have, you know, support groups. We have a virtual modif home modification program to help people figure out how do I make my home livable if I am in a [00:19:00] wheelchair? One of the huge things that we do is we. Financially support multidisciplinary care. So these, this is where a person with a LS would get the, you know, their medical care.

It's, it's very unique in that. Because a LS is very unique and it affects so many different things. A person with that diagnosis has to be seen by many different specialties. So what a multidisciplinary clinic does is it brings all those disciplines together. Not only does it bring all those individual disciplines, so we're talking the neurologist, the speech therapist, the nutritionist, the physical therapist, the respiratory therapist.

Psychologist, you know, all, all of those to one appointment. But these are people who are also familiar with a LS, and that's the key. You don't wanna be going to [00:20:00] someone who's never treated an a LS patient. So if you go to a multidisciplinary clinic, you know that these people know the disease. On top of whatever specialty they have.

Jeff Holden: Well, not to mention the challenge of, if you didn't have it that way, you have to go to nine different places. 

Ann Graef: Mm-hmm. 

Jeff Holden: With somebody who's basically disabled, newly disabled, you don't know how to function with all this stuff. Exactly. How do you get the wheelchair in and out of a car? Can you, do you have a vehicle?

All the elements, you know, the transportation, there's just so many things that impact what. This disease causes, 

Ann Graef: well, I'm preparing a patient to go to that many as well. I mean, people don't realize that, oh, you have a, an eight o'clock, you know, appointment. Well, you back it out in your head Yes. And you're like, okay, I'm probably gonna have to get up at about three 30 in order to make that that happen.

Because you have to get yourself ready, but you're getting them ready as well. And it does take probably about two hours and even, you know, driving there. [00:21:00] You're being careful. You're in a handicapped van. You have to lock them down. You're locking them out, trying to find places to park with these big vans.

If there's, if there's no space available, it, it's time consuming. So take that and multiply that also by eight or nine. Yeah, and, and it's a lot. 

Jeff Holden: And you do have some equipment. For the patients as well, correct? 

Nancy Wakefield: Yes. Yeah. Um, talk a little bit 

Jeff Holden: about that. 

Nancy Wakefield: One of the programs we offer is our, our durable medical equipment and loan program.

Jeff Holden: Okay. 

Nancy Wakefield: So the reason we have that is because there are certain pieces of equipment that may not be covered through insurance. Again, if we go back to the fact that this disease is progressive, that means their needs are changing constantly. 

Jeff Holden: Right. They're variable too. Correct. So some people may rapidly deteriorate.

Mm-hmm. Others may go over a longer period of time. 

Nancy Wakefield: And if you have somebody who is a fast progressor insurance, many times cannot keep up with the progression [00:22:00] because not only do you have to get into the doctor, get, you know, seen the doctor puts in an order, it goes to your insurance, you know, it has to be approved through insurance, and then it goes to, let's say it's a power wheelchair.

Then it goes to, you know, the maker of the wheelchair. They actually have to make that chair to fit your specifications. You can imagine how long it might take. 

Jeff Holden: Mm-hmm. 

Nancy Wakefield: A couple of months minimum. And you might have a patient who needs it today. So what our program does, it fills in those gaps. If you are found to need, we're just gonna use the wheelchair example today.

We could get that wheelchair temporarily a loaner to you today so that you don't have to wait two, three months until yours comes to your home. If it's a piece of equipment that's not covered through insurance, typically anything in the bathroom insurance will not cover that. [00:23:00] They see it as a luxury item, so you know, equipment to get into the shower that is not covered with insurance.

So we're able to. Give people 

Ann Graef: those pieces of equipment. Yeah. The insurance company doesn't recognize what the caregiver needs in order to take care of that particular patient, if it's to help me. So my late husband was six one a hundred ninety five pounds. He, he, when he became unmanageable than for me, any of those aids, their insurance, the insurance wasn't gonna cover that, but they covered me.

Yeah. The Al s associations program helped me out. Okay. 

Nancy Wakefield: Yeah. All kinds of equipment, including communication equipment. I was just gonna ask Yeah, I was just gonna ask. Yeah. So most people will, you know, recognize the, you know, Stephen Hawkins name, right? And have heard him speak on, you know, a computerized, you [00:24:00] know, device.

Um, we've come a long way from that. But those, that's, you know, those kinds of computers. We have in our loan closet, we have anything from basic, you know, posters where you can point to letters to get the message across to those computerized devices that mm-hmm. Actually create a voice that speaks for you.

Jeff Holden: We just had Ctech in here. Communications technologies. Yes. 

Nancy Wakefield: Yeah. They're one of our partners. We always work with them. Yeah. What 

Jeff Holden: a perfect segue. I didn't expect it to go this way, but they have, you know, the provision for people with disabilities to communicate in so many different ways. What a fascinating conversation it was.

Let's take just a minute to hear from the people who make this program possible. 

SMUD: Make our communities bright with Smudge Shine awards. Now through July 31st, your nonprofit can apply for a chance to receive funding for [00:25:00] projects that improve and revitalize communities In our service area, we're seeking proposals that support Zero carbon workforce development, environmental justice inequity, inclusive economic growth, and STEM education.

Smudge Shine Awards are competitive and funds are limited. Submit your proposal by July 31st. Learn more at smud.org/shine. 

Jeff Holden: I'm thrilled to have Western Health Advantage partnering with us as they do so much to support so many nonprofit agencies in our community. As a truly local health plan, you'll find individual and family options, employer options plans for CalPERS and Medicare Advantage.

From medical services to pharmacy health and wellness support, as well as behavioral healthcare, Western Health Advantage has a plan that fits what you need as an employer for profit or nonprofit business, individual or family. You can find more@westernhealth.com. 

Scott Thomas: Hello, this is Scott Thomas with CAPTRUST in our Sacramento office.

I specialize in working with local [00:26:00] nonprofits and associations annually. We survey private and public nonprofit organizations across the country to better understand challenges they see in today's environment. In our more recent survey, we heard concerns about proper board governance, mission aligned investment, and how to implement alternative investments.

If you would like a copy of the survey or to discuss your organization, look me up. scottThomas@captrust.com 

Jeff Holden: Collaboration. Mm-hmm. Who do you work with? Mm-hmm. Who do you find that you work within the community or the greater region in terms of support for people with the disease? 

Nancy Wakefield: Yeah. Well, obviously, you know, there are a lot of.

Vendors and, and companies that we work with, but also other nonprofits, whether it be for something like communication, education. We turn to Ctech for that. Often we will post their, their educational [00:27:00] seminars. We also work with organizations like Delaware, caregiver Resources, passages up in the Chico area.

'cause remember we're, we cover a lot of counties, right? So there are a lot of different nonprofits that we may be working, depending on where we have a need, where we have someone who has a need. I would say our largest collaboration is with our multidisciplinary clinics. Mm-hmm. And in this greater Sacramento area, there are five, so uc, Davis, Kaiser, we have the va.

The VA has a a LS clinic. There is a clinic up in the Redding area called Catalyst Neuromuscular. They have a multidisciplinary clinic we're a part of. Then there's one of the oldest clinics. One of the first clinics was Forbes Norris in, in San Francisco, and [00:28:00] they bring their team and do a clinic here, mobile.

Jeff Holden: Mobile. They actually bring it to the community for us to go to them. Mobile satellite clinic. Wonderful. 

Nancy Wakefield: That comes once a month and sees patients in this area. That was all. You know, put together the satellite clinic came to be years ago when we didn't have anything else in Sacramento. And so, you know, it was a matter of, okay, people are having to drive all the way to San Francisco to be seen.

And again, you know, and explained how difficult it can be to get to an appointment. So imagine now you're going to San Francisco. It's hard enough for, you know. For anyone to go into the city, but these appointments can be hours long, you can imagine. Mm-hmm. When you're seeing so many specialists. So people were having to spend the night in a hotel, and so we looked at it and said, we need a clinic here.

We need to be able to have people seen here and worked with Forbes Norris to bring their team here once a month, and they continue to do that. [00:29:00] 

Jeff Holden: That's fantastic. Yeah. How about funding? How is the organization funded? Obviously there's a, you know, umbrella of the. Corporate side of things, the national side of things, but when you get to the local organization, what does that look like?

Nancy Wakefield: You know, I think our, the largest chunk of our funding are donations that come from people. People who either you know, have received, you know, the services or know someone who has received the services. That's probably the largest chunk. We also have some grants. Yo. Dehi, which is um, a tribe in this area, Creek, 

Jeff Holden: correct?

Yes. Mm-hmm. Yes. 

Nancy Wakefield: They have been very generous with us, and we've received several grants from them. Marshall Foundation, Marshall Health, Marshall Medical. Mm-hmm. Okay. Medical, the Kelly Foundation. We have another partner, Eminem Whitmeyer. It's a family foundation that supports our loan program. Our equipment loan [00:30:00] program.

Okay. Has for years, Parker Foundation. So. 

Jeff Holden: Wonderful. We 

Nancy Wakefield: receive grants from those, our donations. And then in Sacramento, one of our biggest events is our annual walk to defeat a LS. And those happen, you know, the walks happen across the nation. Um, and certainly in Sacramento, it's, it's one of our biggest fundraisers, 

Jeff Holden: which is great to hear.

And that takes place typically in September each year? Right? 

Nancy Wakefield: It's September 21st. 

Jeff Holden: This year. This year. Which is 2025 when we're recording it. 

Nancy Wakefield: Yes. Yeah, September 21st, we're 

Jeff Holden: in front of it. So if anybody has an interest 

Nancy Wakefield: Yes, absolutely. Can reach out to us, can reach out to Thomas who coordinates the, the entire walk.

It is, it's a, a wonderful event. I mean, not only are we raising funds, but. We have all of these people coming together for a fun day of just meeting people, getting to see people that you've [00:31:00] met before. Maybe you met them last year, now you're seeing them again. Activities, food, obviously the walk, music, it's, it's a very fun event, but doing some important work raising funds.

Well, it helps, 

Jeff Holden: it's a branding element too, because people see the disease visibly. Yeah. It gets covered by, yeah. Media and just the size of the walk. What is that and what are all those people walking for? Well, a LS what's that? 

Ann Graef: Mm-hmm. Well, they're very visible because they're in their, you know, the patients are in their 

Jeff Holden: chairs.

Chairs in their chairs. 

Ann Graef: And last year we had a very memorable moment with a, a patient who was, who was in a chair, but he was determined to cross the finish line walking. And he, he, his physical therapist, who ironically turned out to be. My late husband's physical therapist, he recognized me. They all, they took him, stood him up, and walked him over that line.

Jeff Holden: Amazing. 

Ann Graef: It was amazing. An amazing, amazing moment. It was probably [00:32:00] the last time he would ever, you know, be able to do that. But there's so many moments, like when you're around, around. You'll see some tears, you know, of course, from people who have recent losses, you know, looking for, you know, the next step in their lives.

And then you see the newly diagnosed who are seeing their future, you know? Mm-hmm. As they are. Mm-hmm. They might have only been diagnosed two months ago and haven't been to a support yet, and have not seen what the reality looks like. So it's all of those people come together. 

Jeff Holden: Let's take a moment to tangent.

Ann Graef: Mm-hmm. 

Jeff Holden: Money's no object. I am not gonna say we're gonna cure the disease because the money's no object. But in relationship to the operation here, we've got somebody who says, I wanna give you a blank check for this. What would you do with it if I did? What would it look like? And Anne, you can chime in on this too, because as a caregiver, you recognize the support the agency provides.

So these things would be great [00:33:00] if, and, and Nancy, obviously because of your experience, you can say, here's what I would love to see happen. 

Nancy Wakefield: Mm-hmm. Mm-hmm. All right. So we're taking a cure off of the table point. Yeah. Because we can't, we can't. So Yes. Do that. Yes. Although, 

Jeff Holden: ideally we would love to have not have this conversation because Absolutely.

We found an answer. But short of that, because I don't see that coming anytime soon. 

Nancy Wakefield: Yeah. Or, or even, you know, treatments that can, you know, help prolong and help people live with the disease. I mean, that'll be the first step. 

Jeff Holden: Mm-hmm. 

Nancy Wakefield: But I think if we're talking about, you know. What I would like to see for care services, and that's the work that we're doing with the families.

I think it would have to be around support for caregiving. It's one of the biggest needs and something that isn't covered and, and it's interesting because. As a population who, you know, we may not have, most people [00:34:00] may not have to deal with the caregiving or, you know, deal with it in a different way.

Mm-hmm. Than, you know, with a LS what I find is that when people call us, they expect that, well, you know, I live in this country, of course there's gonna be support for me. You know, in the caregiving arena, and there really isn't, and Medicare doesn't pay for caregiving. If you are, you know, lucky enough to have purchased, uh, insurance policy for long-term care, or you're a veteran, or even if you are eligible for Medi-Cal, then you may have some financial assistance from Medicare.

But outside of that, there is no. No assistance. So that means that your loved ones are caring for you and in many situations, that's the spouse and the spouse is caring for you. Mm-hmm. By themselves and [00:35:00] may not have breaks. And so just being able to help people with that so that they are able to. Afford assistance with caregiving to give them breaks to, you know, it, it's a devastating disease.

Physically devastating. Emotionally devastating financially In some cases, yes. Financially devastating. And so to be able to help people with that financial part of it, I think would be. My, you know, on 

Ann Graef: the top of my list. Yeah. And Mike, I have a, just a, a quick story there. I, I did have some of, I got to a point in the last year where I needed to have some help and I had a caregiver for 30 hours a week.

When she left on Friday at 3:00 PM I knew that until Monday at 9:00 AM it was all me and I used to close the door and then I would sit down on my stairs, were right next to her. I would sit down next to that. I just take a, a deep breath fighting the urge to just panic and [00:36:00] cry and then just walk in and say, I'm coming.

So that he would know that I was there. Mm-hmm. It is, it is. It is critical to be able to provide support and if you can provide that extra little bit of help for somebody down the road, very, very important. I would also wish for a. More of our patients to be able to participate in clinical trials because clinical trials happen all across the United States.

And there may be that they're the ones that are here in California. I mean, if you're here in, in, up, in, in Northern California and the trials down in Southern California, that's a lot. And there's no insurance company that's gonna pay for that. So you're gonna be shouldering, you know, the, the, the transportation cost and, and, and maybe they're not ready.

There's one, you know, across the country. Just being able to get a patient there. That, that we, we need patients because we don't have enough of 'em, I think that are going into trials. I mean, I hear about, I still, you know, read some of the legislation that's going through. I still read about some of the clinical trials and it [00:37:00] just scares me when I see there's only four in the trial.

What does that mean? 

Jeff Holden: Which we were talking about before we got started. That Right. The trials are so small, they're not enough people to get enough data to say we see something, you know, or a pattern. Mm-hmm. Or anything. Mm-hmm. You need, you know, at least hundreds, if not thousands, you 

Ann Graef: have to get them in the beginning of the disease.

'cause at the end of the disease, they're not gonna be able to. 

Jeff Holden: Right? Mm-hmm. Right. So the caregiver element. And I want to phrase this because I want people to hear who possibly are listening, say, I think I can help here in some way, some way, shape or form. Mm-hmm. Mm-hmm. We're not gonna get a blank check, I don't think, but just to the extent of that's where that not only is that the umbrella dream, if we could, is to really support the caregivers, but I would imagine that might even be the greatest need, which is, you know, our next question of once we come out of the unlimited, well now we are limited.

What does it look like? What is the greatest need? 

Nancy Wakefield: Yeah. Oh my gosh. [00:38:00] Greatest need. I mean, there are so many needs, but again, you know, I think the panic that I hear in people's voices when they realize I am all my spouse or my father or mother has in terms of, you know, caregiving. Is is heartbreaking because they're looking at you like, I can't do this by myself.

Jeff Holden: Mm-hmm. 

Nancy Wakefield: You know, please help me. So for those of us who work in caregiving and we've had to address that and, and talk with people who are exhausted and don't know where to turn anymore. So, yeah, that's huge. I have to agree. You know, the clinical trials are the only way that we're going to be able to get to, you know, approving drugs that are either helping with the progression or curing this disease.

So absolutely, that is a humongous need. [00:39:00] It's really hard to pinpoint just one thing. There's so many issues that we are needing to address when somebody's diagnosed with this, but. I think I have to stick with the caregiving needs, helping family manage that, 

Jeff Holden: and that's. Acceptable. People can wrap their head around that.

Sometimes it's a little bigger, well, we need this and this and this, this, these medical devices, and it's like, I'm not quite sure what that looks like. Everybody knows what caregiving means. 

Ann Graef: Yeah. 

Jeff Holden: We've all done it in some way, shape, or form, 

Ann Graef: but there's small things too that that would make a difference too.

I remember. I had to move to a new house and with, I was still working full time, as was my, my husband Jay, and I, I looked at my floor and my floor hadn't been mopped in three months, and you can imagine what it looked like. And someone who I, I worked with just said, you know, my daughter is gonna come over to your house and she's gonna come take [00:40:00] care of that for you.

That was the most amazing little thing. Was to finally see in my new home I, and in his home. We both were very nice, neat, clean people looking at this. And she came and she did that. It's those little small things. Somebody coming over just out of the blue and they had gone to a deli and bought us just a whole, a whole smattering of things and said, put this in your refrigerator so that you guys have something.

It didn't matter that they didn't know that Jay couldn't eat probably half of that because he has, you know, his muscles swallow in his throat. What about that was okay? It was, it was there. It was the thought. So all tho all those little things are just picking up the phone at night. Just one saying, Anne, just thinking of you and Jay Wright.

That's it. 

Jeff Holden: And the value of a volunteer, it's just Yes, absolutely. 

Ann Graef: That's where I was segueing. Yeah, always. Because I would like to see 5,000 people at our walk on September 21st, because this is how you, you meet the families and you hear a little bit about their story. You see a mom there with, with a young [00:41:00] child.

And I think two, was it two years ago we had someone and she was expecting twins and her husband was diagnosed with a LS. Looking at that family and just saying how, what's one small little thing that I could do to make them smile? 

Nancy Wakefield: Mm-hmm. And that's a great point because we do rely on volunteers so much, and there's so many different things at different levels that volunteers can do.

I mean, they can be on our leadership council, you know, Ann was on our board for. Many years, but they can also do things like help somebody with, you know, a move that they have or, you know, one of the huge needs we have is getting equipment to people if they're not able to come pick it up at our office point 

Jeff Holden: A to point B.

Nancy Wakefield: Mm-hmm. We, we rely on volunteers to get this piece of equipment. To the home of, you know, the person who needs it. So all kinds of things like [00:42:00] that, that a volunteer can do. 

Jeff Holden: How many people do you employ? 

Nancy Wakefield: Well, here, just in the Sacramento area. In the Sacramento area, we have five. 

Jeff Holden: Okay. Which is a lot of work for five people 

Nancy Wakefield: and, and five.

But they're not all care services. Oh, even, yeah. Even 

Jeff Holden: more work. Okay. Yeah. In the scope of things, you're a region leader, 24 counties, you've got a lot of stuff on your plate on a day-to-day job basis, and you hear these emotional stories from people all the time. How do you take a break? What's, what's a hobby for you?

How do you release from it? 

Nancy Wakefield: Yeah, yeah. Well, I learned a long time ago going into, you know, social services right out of college and always doing nonprofit work. I learned a long time ago, I think it was my mother who told me my very first job, you need to figure out how to separate from this when you're home.

Jeff Holden: Mm-hmm. Because 

Nancy Wakefield: you cannot. [00:43:00] Continue like this. 

Jeff Holden: You can't take it home every day and live with everybody's problems. No. Otherwise you, you become, 

Nancy Wakefield: yeah. Yeah, and that was, I was doing something very different working with children back then. I will say that the work that I've done for the a LS Association has been the most rewarding.

Work that I've done because it's very, you know, your impact is so tangible. Like you can see the impact that you're having. You can see the need that's there and how, and that you have a way of. Addressing those needs. Not all the needs, but obviously Right. You know, many of the needs. So it's fulfilling work.

I don't want you to think that, you know, it's, you know, it just brings me down or that I have to, for 

Jeff Holden: 15 years, I suspect there's some, yeah, 

Nancy Wakefield: it's very fulfilling work value in 

Jeff Holden: it. Yeah. Yeah. That keeps you going. 

Nancy Wakefield: And, and we have moments that just like replenish you. And, and those moments are not, it doesn't have to be a specific [00:44:00] thing that happens, but it can be just facilitating a, a support group.

Those are some of the times that I felt the most fulfilled. Like I would finish a support group. Get in my car and just feel good for the rest of the day because people connected, people were getting help for some of the things that they felt there was no help for. They now have made a new friend, they found a way to get a need met through somebody else who know knows somewhere.

Mm-hmm. So there are many of those moments. I mean, yes, I have, you know, I have a family. I have lots of things I do outside of my work that help me. But, you know, I, I have to say that I, I always feel good about the work that we're doing and, and that just keeps me going. 

Jeff Holden: And Anne, if I could ask, 

Ann Graef: why do I keep coming back?

Jeff Holden: No, actually, I, I wasn't going to, I wanna go a little bit different on that. As a [00:45:00] caregiver, having seen and been through it. And now obviously on the other side of it, maybe some words of caution or advice to those in that space today who have their journey still cut out for them? 

Ann Graef: Actually, that happens quite frequently.

When we're at the walk. We have a, a section, a booth, and it's a program through our walk called Unlock a LS. We're trying to unlock why this is happening and how do, how do we defeat it. And there you'll get new patients who have lost someone in their lives. And one of the, one of their questions is, does it ever get better?

Jeff Holden: Mm-hmm. 

Ann Graef: And my answer is, I can't, I can't promise you that it'll get better, but what I can tell you is that it will be different. Life will be different. I, I love to travel. I can't go anywhere in the world without looking at another country and looking at wow. Where do the chairs go? How would you get a wheelchair up there?[00:46:00] 

How, how, how can a person step off the, a curb 14 years later since Jay has passed? Mm-hmm. I, I still have that in my mind, and that's a good thing. It's a good thing. So it, it stays with you, but it will be different. 

Jeff Holden: Mm-hmm. 

Ann Graef: I said, life go, life will go on 

Jeff Holden: just differently. 

Ann Graef: Just different. 

Jeff Holden: How does one find out about the organization?

What's the best way to learn more about the disease? Mm-hmm. Let's say somebody has somebody in their circle that has the disease and they want know more about it or has just been diagnosed, where do they go? What do they do? 

Nancy Wakefield: Yeah, well, we have a great website, als.org, and not only just that simple, www s that's it.

Yeah. And not only is it full of information for someone who's just trying to. Figure out like where do I go next? But there's a huge educational component in it as well. So for people who are [00:47:00] already registered with us who have, you know, are. Working through the progression there, there are all kinds of educational recorded videos of trainings that can, you know, help with caregiving, how to transfer somebody, you know, all nutrition, all kinds of things.

So that, that's the best thing. If you're in Sacramento, you probably have noticed our huge sign at our office off of Sunrise. We get people who just stop by because they see the sign. But I would say our website is the best way. Okay. And 

Ann Graef: then drill down and find that phone number for the Sacramento office.

And just don't be afraid to pick up the phone and just say, I've recently been diagnosed with a LS, I need help. 

Jeff Holden: And, and I'm sure there's those moments of desperation. Oh my gosh, now what? Mm-hmm. Mm-hmm. And there is. An oasis somewhere in the desert of unfamiliarity. Yeah. Where you can actually grasp 

Nancy Wakefield: Yeah.

Jeff Holden: And, and yeah. [00:48:00] You know, get some, some answers if nothing else. 

Nancy Wakefield: Exactly. Yeah. And know that there are people there who are gonna help you and you know that you're not alone. 

Jeff Holden: Right. Well, a LS is a, a frightening diagnosis, no cure, and a known progression, which is really disturbing for some people. But keeping one's motivation, both caregiver and patient, it can be so very difficult as we've just heard.

And from your experience and certainly Nancy, from numbers and numbers of people that you deal with. Mm-hmm. The organization is truly a godsend for the families that are affected by this disease. And your work is absolutely incredible. And you came back? I did. To participate. Yeah. I've nevertheless so. So to you or your team, to your board leadership council.

Thank you for what you guys do. Thank you for the opportunity to share the story today for the people who are going to be dealing with this condition at some point in time. And for those who are, you know, the benefit that you're providing, [00:49:00] whether it be transportation, whether it be just information, whether it be access to clinics or communication devices, you know?

Thank you. We appreciate what you do. 

Nancy Wakefield: Well, thank you for giving us the opportunity to talk about it. We appreciate it. Yes, thank you for having us. 

Jeff Holden: So very, very welcome.

Thank you for listening to the Nonprofit Podcast Network. I hope you enjoyed the episode. If what you heard moved you, please reach out to that organization and do what you can to help. If you like and appreciate what we're doing to support local nonprofits, please give us a positive review, subscribe and share.

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